Hello all. I thought I'd write this post as an update and see if anyone has any advice, I really do find the advice given here valuable.
Susie had two scans, a 3t brain MRI with contrast and a chest CT.
The brain scan showed stable large cystic tumor (it's large, I've shared a pic) and the other small nodules are reduced. No Leptomeningeal disease (thank the lord).
The chest showed some progression BUT Susies last scan was JUNE. We think the disease has progressed from June to Sept (as Susie was REALLY ill in Sept) then started Capecitabine in October and is MUCH better now, she's up, shes doing everything a young mother would normally, almost without symptoms so we feel sure it's working.
We have a neuro Oncology meeting today where we think they will offer to remove the cystic tumor BUT refuse SRS on the smaller ones due to "disease progression". We will get into that fight today, we only think it's looking like progression and they missed a vital scan at the start of treatment (please all be firm, make sure they scan you at the start of a treatment so you know it's working or not!!)
I'm hoping we do surgery on the big one, zap the little ones, that deals with the brain for a bit.
I then hope the scan in March shows regression in the lungs, then I find someone privately or NHS who will do SRS to reduce the tumor in the lungs and we carry on like that for a good while! I hope Capecitabine works for a long time. Our ONC has already suggested Gemcitabine and carboplatin moving forwards but we think we should stick to Capecitabine for a while, maybe up the doseage (currently low at 1000mg/m) and monitor symptoms and scan in March.
I'm going to stop now as this is a long post, if you've made it this far, well done and thank you. Any advice or experience would be greatly appreciated, we are doing everything we can here!
Leo and Susie Payne , XXX ♥️
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Winner123
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Hi Sandra, thank you for your reply. We've JUST come home from the meeting. The surgeon will do the surgery but again, they are worried about the risks. While Susie is responding to Capecitabine, she has to stop for 10 days before surgery, and probably 3 weeks after surgery so 4 weeks plus off the drug that's helping. Could the chest mets get out of control in that time? If there are complications, she'll need antibiotics and must stay off chemo even longer. That could be devastating.
The biggest revelation is the big met pictured has shrunk from 5cm to 4cm, that's after just 7 weeks of Capecitabine, cannabis oil and 222mg Fenben (plus COC drugs and supplements). The smaller nodules have also shrunk. Could we shrink this now 4cm cyst to 2cm over another 7 weeks? If we could, they could SRS that without surgery. We have agreed to book surgery just in case for the 9th Dec but if the pre MRI shows stable (only 3 weeks since the last MRI) or even more shrinkage, we are going to keep our current protocol and wait and see, possibly up the Capecitabine dosage a little to kick it further. We are both praying for that come 9th Dec. That will also give us Xmas with the children and family with no surgery to recover from!
Everything crossed as usual, thank you for being there, your kind words and brilliant links, I appreciate it more than I can tell you.
Ps, I did laugh, I've got every one of Susie's scans and I've taught myself to scan through the layers of MRI and CT scan and measure the tumors. I did this on her latest scan and measured 4cm at widest point because it's such a big, clear tumor to measure. I told everyone and nobody would listen to me. Susie actually said "you are not an oncologist Leo". I understand why as she didn't want to get her hopes up. I'd like to say I'm man enough to have not given her a massive "told you so" today but I'm afraid I can't! I totally knew that!!
This is all way beyond me. I am saying a prayer that Susie won't need surgery and that your family has a lovely Christmas. Hugs, prayers and blessings. Hannah
You two really have your hands full! I will keep both of your, and your medical team in my prayers and hope you will find the best path forward. Having children who still need their mother sure adds a layer to all this. I have no real advice for you but do have a couple of things about my own, but quite different cancer journey that popped into my head while reading your note. I have invasive lobular mbc, E+ her2- that was already metastatic (bones) when diagnosed in 2004. It has responded well to very standard treatment and I am on just third line treatment. That has led me to thinking that for me, I would rather stay on any one med that has been helpful a little bit "too long" than not quite long enough. I don't know if that would make sense for Susie, but I just wanted to throw that idea out there. About a year ago, I developed a blocked ureter and when the blocking tissue was removed, lobular bc cells were present, the first non bone met for me. Surgery solved that though a stent was put in and has to be changed every few months. In August a brain MRI showed two tiny mets in the right inferior cerebellum, which explained the balance issues I have been having, and problems with hand coordination. I had one session of stereotactic radiation the first week in September. That came with warnings about possible brain damage, swelling, etc. I just had the first post-rad MRI and it showed no cancer. But I still have about the same balance issues plus worsening difficulty using my righthand. I am not sorry that I had the rads, and I am doing PT and OT, but jin my 17+ years with mbc, these are the roughest issues I've had to deal with. I don't know if there is any wisdom in there for you, and I know that we each have our own individual experience with this lousy cancer......... Like Susie, I have a good husband who is always here for me and that makes this all so much easier! Loving Susie and being there for her is a great gift to her and shows your children what marriage can be! And that is huge! Remember to take care of yourself! It's easy to forget to do that.
Hey. That's really kind of you to reply and really useful, thank you. Susie has a blind spot on her right side due to the large met. We've been told thats permeant and surgery could actually make it worse. I hadn't considered SRS making it worse but I will heed that, I thank you for that info very sincerely. Let's s see how we get on, pray for the best as ever. I'm doing fine thank you, if I'm a good husband, Susie is a better wife. We have support with family so I get to do my own things when needed, Susie still does and always has looked after my every need, she's truly amazing and I'll always be sad that (if everyone is right, I hope they are not) we won't be growing old together. 😥 We are just doing everything possible to keep her around for as long as possible and who knows, new advances and miracles do happen. Thank you for your advice again, it's really useful and of course best wishes and good fortune on your own journey with this hateful disease. XXX ❤️
One thing I would ask about if I were you is whether they mean the blind spot could get worse means worse in the same eye, or worse meaning she could lose vision in the other eye too. Being blind in one eye, as rough as it sounds, is a much smaller problem than having some loss of vision in both eyes!
GOD bless you, and your family. I am praying that you will be able to get the SBRT , and I pray the surgery on the larger tumor will be removed successfully.🙏😇
Hi LeoBest wishes to Susie and yourself, it’s great she is feeling a lot better and able to feel life is showing her some normality with the family is a great thing. Wishing her good luck with whatever yous decide re future treatment and enjoy every moment with your beautiful family. I was diagnosed this time last year and really thought last year would be my last Christmas, feeling grateful as today I have spent the day in Yorkshire on the Polar Express with my beautiful grandson age 20 months, what fun we had and the memory of the look on his face when the train set off will stay with me forever. Remember to allow yourself to have fun when you do feel good Susie, you sure deserve it and love to all the family.
Thank you Debra, that's a lovely message. That's what it all about isn't it? Nobody knows how long we got left, make each moment count. We are trying our absolute best (the bloody house looks like Santas grotto!!) Leo and Susie. XX ❤️
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I am praying that you will be able to get the SBRT , and I pray the surgery on the larger tumor will be removed successfully.🙏😇 
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